I think it would be a good idea to find out if your cerebrospinal fluid is under pressure.

Best regards,

Rich

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Yes, these symptoms can be caused by increased intracranial pressure, one cause of which is increased CSF pressure. I have a recollection of this being found to be fairly common in ME/(CFS) but don't recall the source. While spinal tap is useful for diagnosing this condition, if you don't want to undergo this procedure, you might try to see if certain medications targeted to this cause are helpful. Acetazolamide, in particular, works by decreasing the production of CSF significantly, thereby decreasing the fluid pressure. Other meds listed as helpful for this (called pseudotumor cerebri, because it mimics the symptoms of a brain tumor which also can increase intracranial pressure), are furosemide (powerful diuretic, which is probably not a great idea in ME pts with already low circulating blood volume) and migraine medications.

Re: "I did have relief of my headache after the spinal tap. The doctor aid that being at the top number on the normal range meant my pain was not caused by too much pressure." I don't see how a physician can make such statements. Evidence that you have relatively high pressure combined with the clinical symptomatology that fits (hurts more when you lie down--that is, when you increase the pressure in your head combined with relief when the pressure was relieved by reducing the quantity of CSF via spinal tap) sounds pretty suggestive to me that it IS the cause. People with ME are more sensitive to things that would not necessarily cause pain in healthy individuals; put simply, they have irritable nerves. Have you tried acetazolamide? I don't know if how well it works for ME pts... I tried it years ago, but my recollection is vague about the symptoms I was having at the time and the outcome. If I had recurrence of this type of head pain persistently, I would definitely give it another go. Fortunately for me, episodes of this kind of head pain have become rare. I remember them being horrible and not responding to my usual headache meds (triptans & opioids). In particularly severe cases of pseudotumor cerebri, in which the patient's vision is threatened for example, a shunt can be placed to move CSF out of the CNS).

I think it would be a good idea to find out if your cerebrospinal fluid is under pressure. An ophthalmologist or optometrist could tell whether you have papilledema by examining the backs of your eyes. If the optic disks are bulging, that would indicate that the spinal fluid is under pressure. A more invasive but more quantitative way is to do a spinal tap (lumbar puncture) and measure the pressure directly. If the spinal fluid is under pressure, it will collapse the blood vessels feeding the brain, and that will cut down the blood flow to the brain, which will affect brain function. The spinal fluid can become pressurized if the brain swells even a little, such as due to inflammation from an infection there, because it is in a confined space.

If a sample of spinal fluid is taken during the spinal tap, it can be analyzed for infection. I'm not a physician, and I recommend that you consult with one. Neurologists commonly do spinal taps.

Best regards,

Rich

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Thanks Rich. You have been very helpful.I will try to arrange a app. with an ophthalmologist.Do you have any idea on why left side of the head is affected? Best wishes.

I have had a spinal tap. My pressure was at the top end of the normal range. I have a headache and head pressure 24/7. Lying down always makes it worse. I never lie down during the day. The only way I get sleep is with medication and I always wake up with the headache at its worst. and yes, it effects my cognitive function.

I did have relief of my headache after the spinal tap. The doctor aid that being at the top number on the normal range meant my pain was not caused by too much pressure. However, I do believe that my pain is caused by too much pressure in the CSF.

Sorry, I have no answers for you. I think treating the infection and inflammation is what will work, but time is moving really slowly as far as good research into ME.

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Interesting. In my case lying down is a must. otherwise i loose my functionality totally.I can not stand up,can not think or listen. It feels like my brain totally shuts itself down.Best wishes.

Thanks so much to all who have answered. This is a large group but from the answers it seems to me that there are not many who have similar problem to mine. Also no one mentioned about one sided problem as I have. I kindly request anyone who has one sided head pressure problem with numbness at related side and with almost total brain shut down for long term to report me. If I do not see anyone having a similar problem I will conclude that this is not related to CFS and I will concentrate on other possible causes.I am close to point of getting insane because of this problem.So,Issue is so important for me..I also have some involuntary muscle movements at neck and head area but not sure if these two are related or separate problems.I would also like to add that massage helps. After getting 10-15 daily massages from a qualified massage therapist I start having some of my brain power back,numbness and pressure goes away partially.Thanks for your help. Best wishes.

Whether it's part of your ME/CFS or not, I would definitely go to a neurologist for a full work up. Headaches are very tricky and there are different forms of them and everyone will feel it differently. One sided headaches are usually diagnosed as migraine headaches but I don't believe that brain fog is. Like Rich told you in his post, you should investigate it further.

Thanks so much to all who have answered. This is a large group but from the answers it seems to me that there are not many who have similar problem to mine. Also no one mentioned about one sided problem as I have. I kindly request anyone who has one sided head pressure problem with numbness at related side and with almost total brain shut down for long term to report me. If I do not see anyone having a similar problem I will conclude that this is not related to CFS and I will concentrate on other possible causes.I am close to point of getting insane because of this problem.So,Issue is so important for me..I also have some involuntary muscle movements at neck and head area but not sure if these two are related or separate problems.I would also like to add that massage helps. After getting 10-15 daily massages from a qualified massage therapist I start having some of my brain power back,numbness and pressure goes away partially.Thanks for your help. Best wishes.

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Hi, Cindi.

I don't know why your issue is confined to the left side. If the spinal fluid were pressurized, it would seem that the whole brain would be involved. One thing that occurs to me is that there might be a problem with blood flow on only one side of your brain. There are techniques that can look at blood flow to and in the brain. Doppler ultrasound examination is one way to look at least at the flow in the carotid arteries. This is painless, quick, and relatively inexpensive. If the flow in your left carotid artery is a lot less than in your right carotid artery, that might shed some light on what's going on. Other ways are to run a SPECT scan or a functional MRI. They will look at blood flow in the brain itself, and again, the two sides could be compared. Dr. Daniel Amen is famous for running SPECT scans and treating based on the results. He has written some books.

I had severe head pressure (mostly between the eyes), twitches/myoclonus and brain-fog for several months this year. I was able to pin it to food sensitivities. These still occur to some degree with post-exertional symptoms, but the ones caused by food sensitivities had a slightly different feel to them.

I developed a comically large number of food problems, to almost everything except plain meat and fats. A digestive enzyme called No Fenol helped a great deal, along with probiotics and water kefir.

Elimination and rotation diet is quite challenging but it's been worth it for me.

I had severe head pressure (mostly between the eyes), twitches/myoclonus and brain-fog for several months this year. I was able to pin it to food sensitivities. These still occur to some degree with post-exertional symptoms, but the ones causes by food sensitivities had a slightly different feel to them.

I developed a comically large number food problems, to almost everything except plain meat and fats. A digestive enzyme called No Fenol helped a great deal, along with probiotics and water kefir.

Elimination and rotation diet is quite challenging but it's been worth it for me.

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Pressure in the forehead and around eyes can be from sinuses as thats where they are located. Im looking at getting a ct scan to check if theres a blockage there which can cause this head pressure/brain fog. I suppose there are many things that can cause this and we have to eliminate them one by one.

Pressure in the forehead and around eyes can be from sinuses as thats where they are located. Im looking at getting a ct scan to check if theres a blockage there which can cause this head pressure/brain fog. I suppose there are many things that can cause this and we have to eliminate them one by one.

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I had a lot of ear/nose/throat problems growing up - I know all that territory and this wasn't sinus related. I had an abnormal brain MRI this past March, but I was definitely able to nail down the worst of my symptoms to food sensitivities. I feel as healthy as I ever have in my life on my good days, but those are still very few and don't last long. So unfortunately, the food problems didn't solve the principle post-exertional symptoms.

I didn't experience any traditional gastrointestinal problems, but I have a newfound appreciation for gut health. In cases where it's feasible, it seems worth cutting the major culprits like wheat/gluten, dairy and corn for a week or two. If it helps, you'll know pretty quickly if you keep daily symptom notes with 0-5 or 10 ratings (0 being absence of symptoms) for fatigue, cognitive dysfunction, spasms, headaches or whatever.

I don't know why your issue is confined to the left side. If the spinal fluid were pressurized, it would seem that the whole brain would be involved. One thing that occurs to me is that there might be a problem with blood flow on only one side of your brain. There are techniques that can look at blood flow to and in the brain. Doppler ultrasound examination is one way to look at least at the flow in the carotid arteries. This is painless, quick, and relatively inexpensive. If the flow in your left carotid artery is a lot less than in your right carotid artery, that might shed some light on what's going on. Other ways are to run a SPECT scan or a functional MRI. They will look at blood flow in the brain itself, and again, the two sides could be compared. Dr. Daniel Amen is famous for running SPECT scans and treating based on the results. He has written some books.

Best regards,

Rich

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Rich, if blood flow was found to be a problem, do you know what treatment the doctor you mentioned uses? I was told by someone, not a doctor, that he had a spect scan which showed up poor blood flow in the head but that there was no treatment for it. It sounds like the doctor you mention, Dr Daniel Amen, does offer some treatment, would love to know what it is roughly. Thank you

Thanks so much to all who have answered. This is a large group but from the answers it seems to me that there are not many who have similar problem to mine. Also no one mentioned about one sided problem as I have. I kindly request anyone who has one sided head pressure problem with numbness at related side and with almost total brain shut down for long term to report me. If I do not see anyone having a similar problem I will conclude that this is not related to CFS and I will concentrate on other possible causes.I am close to point of getting insane because of this problem.So,Issue is so important for me..I also have some involuntary muscle movements at neck and head area but not sure if these two are related or separate problems.I would also like to add that massage helps. After getting 10-15 daily massages from a qualified massage therapist I start having some of my brain power back,numbness and pressure goes away partially.Thanks for your help. Best wishes.

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Cindi, although my head problems aren't exactly the same as you (I don't eg have total brain shut down, apart from when I've overdone it) and my head pain is, as described, like a steel band digging into my skull, the head pain is more intense on the left side. Also, I have a lot more problems down the left hand side of my body than my right. At my worse when I was bedridden, my left arm became semi paralysed, numb, the left hand completely clawed and I could bear no touch on the left side of my body, but could tolerate a bit on my right side. When I improved, the clawed fingers unfolded (although I still had to wear a splint for a month to completely flatten the fingers and my little finger is still bent a little bit) and I got strength back in my left arm and leg.

Now, when I overdo it (I am housebound) my left arm and leg become weak, slightly numb and I get searing nerve pain down it whilst the right side is much better. I also can never stand touch on my left side of my body, but can on my right. So the left side of my body is definitely effected more than my right. Thought this may be of interest to you.

I don't know why your issue is confined to the left side. If the spinal fluid were pressurized, it would seem that the whole brain would be involved. One thing that occurs to me is that there might be a problem with blood flow on only one side of your brain. There are techniques that can look at blood flow to and in the brain. Doppler ultrasound examination is one way to look at least at the flow in the carotid arteries. This is painless, quick, and relatively inexpensive. If the flow in your left carotid artery is a lot less than in your right carotid artery, that might shed some light on what's going on. Other ways are to run a SPECT scan or a functional MRI. They will look at blood flow in the brain itself, and again, the two sides could be compared. Dr. Daniel Amen is famous for running SPECT scans and treating based on the results. He has written some books.

Cindi, although my head problems aren't exactly the same as you (I don't eg have total brain shut down, apart from when I've overdone it) and my head pain is, as described, like a steel band digging into my skull, the head pain is more intense on the left side. Also, I have a lot more problems down the left hand side of my body than my right. At my worse when I was bedridden, my left arm became semi paralysed, numb, the left hand completely clawed and I could bear no touch on the left side of my body, but could tolerate a bit on my right side. When I improved, the clawed fingers unfolded (although I still had to wear a splint for a month to completely flatten the fingers and my little finger is still bent a little bit) and I got strength back in my left arm and leg.

Now, when I overdo it (I am housebound) my left arm and leg become weak, slightly numb and I get searing nerve pain down it whilst the right side is much better. I also can never stand touch on my left side of my body, but can on my right. So the left side of my body is definitely effected more than my right. Thought this may be of interest to you.

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Thanks so much for your answer. I also used to get some muscle contractions on left side of my body when I tried to meditate. At first my left hand was starting to claw,than lower part of my arm was going upwards and at last my left shoulder was contracting. At that point pain and contraction was so unbearable that I had to stop meditation.This was about 6-7 years ago.At this point I can not meditate at all.As soon as I start it I start having uncontrolled contractions at neck,pushing my head backwards. It is so much that I feel my neck will be broken.Also if I try autogenic training I notice that I can not relax my left side as easy as my right side.It takes much longer time.I wonder if it could be that we are not being able to control muscles on left side?Does anyone know if right brain controls the muscles at left side?Could it be that actual problem is on right side of the brain and effect is seen on the left side. Thanks for answering . Sorry you have this problem,too.

Thanks so much to all who have answered. This is a large group but from the answers it seems to me that there are not many who have similar problem to mine. Also no one mentioned about one sided problem as I have. I kindly request anyone who has one sided head pressure problem with numbness at related side and with almost total brain shut down for long term to report me. If I do not see anyone having a similar problem I will conclude that this is not related to CFS and I will concentrate on other possible causes.I am close to point of getting insane because of this problem.So,Issue is so important for me..I also have some involuntary muscle movements at neck and head area but not sure if these two are related or separate problems.I would also like to add that massage helps. After getting 10-15 daily massages from a qualified massage therapist I start having some of my brain power back,numbness and pressure goes away partially.Thanks for your help. Best wishes.

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What comes to mind for unilateral head pain relieved by massage are 2 pain syndromes. The first is referred pain from trigger points in the neck. Look up trigger point charts: muscle trigger points tend to refer pain in a predictable pattern. Massage can help release the trigger points, which are very hard nodules in the muscles from constant tension. Here's one link: http://www.triggerpoints.net/head-and-neck-pain.htm

The other possibility for one-sided head pain that is relieved by massage is referred pain from facet joints in the neck. Again these have predictable areas of distribution. Here's one picture, though it's not the best: http://championschiropractic.com/archives/207.

Why you would have cognitive issues might be because pain itself when bad enough overwhelms the brain's attentional capacity. Some of the trigger points can cause nausea and vertigo as well.